My Story- Getting Autoimmunity Diagnosed
I’m writing this hub to motivate others who’ve suffered similar stories and situations to get help in getting diagnosed, getting proper treatment, and know that there are many things that can be done to help yourself. Awareness for yourself, your doctors, and others is key to living with autoimmunity. First of all, doctors don’t know it all, they are not God, but most sure do act like it or they blame the patient on having some kind of mental disorder if they can’t find the cause of certain symptoms through testing. If it doesn’t show in tests then there is obviously nothing wrong with you and you’re a hypochondriac, Right? WRONG! I personally feel that a majority of medical doctors, at least most of the ones I’ve seen, have a serious "God Complex" and are all about pill pushing for money from the pharmaceutical companies.
Make an appointment for a swollen throat and leave the doctor’s office with 15 different pills for depression, anxiety, and a sinus infection. That’s my story anyway. First tip, never cry at the doctors office, they immediately think your crazy, you can’t handle life, mark your medical records in red with anxiety/depression disorder, and then proceed to try to pawn you off to a mental health facility. When that’s in your file, no doctor will listen to you, they just think your medical problems are all in your head.
I have suffered with a rare, unusual, and life threatening autoimmune disease since the age of 10. My parents made several appointments for hives, swelling, recurrent unusual infections, and female problems starting at the onset of puberty. The doctors found nothing through tests except the usual hayfever and a few food allergies. I never did develop normal breasts or had a normal menstrual cycle which doctors blamed on me being so underweight all of the time. Unfortunately, due to the misdiagnosis and rarity of this particular kind of autoimmune disease, it has taken 24 years to get a solid diagnosis and positive tests to confirm and treat my condition.
I’ve seen 16 specialists in the last 3 years with life threatening symptoms, one specialist for just about every organ in my body. I started with more minor symptoms as a child and began having serious symptoms about 3 years ago, when the doctors prescribed me a new drug to quit smoking. Since the first symptoms began, doctors and others (including friends and family) have accused me of having a mental disorder, being a hypochondriac, using intravenous drugs, and/or having an underlying psychosomatic condition. At one point, I even began to believe they were right about the mental disorder and called mental health on myself. After speaking to one of their nurses on more than a few occasions, it was agreed upon that I genuinely had an immune system disorder of some kind that desperately needed to be diagnosed.
Information and Awareness for Autoimmune Diseases
Sometimes Smoking has more Benefits than Risks
My previous doctor repeatedly told me that all of my medical problems were caused by smoking and recommended trying to quit using the new "miracle drug". Quitting smoking seemed like the obvious next step to help put an end to my constant unusual infections and allergies. The prescription the doctor gave me for this (Chantix) was the one that finally caused enough damage to make my autoimmune disease visible to the doctors and life threatening. By visible I mean, collapsing, having seizures, cardiac complications, severe breathing distress, vomiting blood, injections and drugs for severe pain, and being hooked up to Life Watch heart monitors in the emergency room and at home on many occasions. Quitting smoking at this particular time was NOT the best option for me.
Smoking suppresses the immune system and that’s exactly what needs to be done in someone who is autoimmune. My own form of self medication I suppose, when I could find nothing else to help ease my disabling symptoms. Not smoking caused my immune system to attack my body even more but the prescription the doctor gave me to quit caused liver disease, a seizure disorder, and seriously exasperated my autoimmune disease. Now, I was dealing with a whole mess of already complex symptoms and also began having severe reactions to almost all prescription drugs, many foods/drinks, and even skin care products. A brief list of my symptoms and conditions at this point were:
*Gastroparesis- causing intense stomach pain, vomiting, continued weight loss, inability to eat solid food, triggered seizures
*Gran Mal and Petit Mal Seizures that repeatedly broke my bones- disorder caused by prescription drug used to quit smoking, and severe reactions to my own bodies Progesterone.
*Severe burning muscles and joint pain- diagnosed as Fibromyalgia
*Fibrocystic breast disease- precancerous changes in breasts
*Cardiac complications- intense heart palpitations, flutters, high increase in heart rate, arrhythmia, cardiac spasms, chest pain, possible heart attack
*Severe breathing distress- lack of oxygen in blood triggering stroke like episodes, swelling in throat, inflamation in lungs and bronchial tubes, severe congestion causing pneumonia, would repeatedly stop breathing while awake and asleep, asthmatic reactions
*Stomach, intestines, and bladder spasms
*Swelling/inflammation in the organs, sometimes chronic
*Memory loss, vision disturbances, hearing loss, difficulty focusing, lack of concentration, disorientation, feeling of not being real
*Tingling in face, lips, mouth, and extremities
*Very high to very low blood pressure
*Various Increase or decrease in hives and swelling
*Various infections- Bacterial (Staph), Fungal, and Viral
*Highly inflamed gall bladder (completely damaged and surgically removed) and pancreatic inflammation leading to hypoglycemia
*PTSD- Post traumatic stress disorder
Again, this is the short list and fortunately, I only suffered from all of these all at once on about 15 different occasions. Most symptoms were cyclic and varied with a few here and there, other symptoms are things that I deal with everyday. My heart, lungs and stomach would act up one time and then the next time I would have seizures, severe pain, and infection. It was becoming impossible to find the 1 or 2 sources of all of my medical problems.
I Can Help Myself Attitude!
I had to develop the mind set of, “I can help myself! I can help myself! I will help myself,” and that’s exactly what I did, even with all of the ridicule and isolation I had been facing from everyone. I spent 3 years putting puzzle pieces together, keeping track of symptoms, when the symptoms occurred, what triggered which symptoms, and kept cross referencing each. To get a diagnosis I had to find a doctor that would listen to me, run test after test, and do everything that I could to get to the bottom of my ongoing medical issues. This required research and more research on autoimmune diseases and a great deal of arguing with doctor after doctor demanding hundreds of tests.
When you walk into several different doctors offices and the first things they want to do is give you an antidepressant or laugh in your face because of your what’s written in your medical records and your complaints, you end up horrified and literally traumatized. Traumatized to the point of causing other disorders like Post Traumatic Stress Disorder (PTSD). The cause of this disorder in me was not only caused by medical specialists repeatedly making horrible accusation, ignoring me, treating me like I was crazy, and always thinking that I had some deadly disease, but also the continuous horrifying and painful symptoms that I was dealing with on a day to day basis. And, of course, the “I’m dying and don’t know why!” thoughts racing through my head, which was actually the truth. My own family and friends even began to doubt me because of the ongoing lack of medical evidence. The saddest and most heartbreaking experience of my life that rendered me completely hopeless on some occasions.
Finding out that NO, I DO NOT have depression problems, a mental disorder, or some other horrifying deadly disease after repeated testing was a tremendous relief but still no answers or medical evidence as to what was wrong with me. I was desperate and scared to death, talking to anyone I could find that may have some answers or knew someone with similar medical problems. Doctors, friends, family, everyone was doubting my mental stability and tired of my constant desperation and burden. These were all things I was completely aware of and felt a tremendous amount of guilt, hopelessness, and humiliation from. Still barely maintaining the “ I can help myslef!” attitude, I talked, doctor shopped, and researched to no end and then, FINALLY... continued in Part 2.
Scroll down for the link to the patent pending treatments that saved my life!
List of Doctors and Clinics that are aware of, test, and diagnose Autoimmune Progesterone Dermatitis / Autoimmune Progesterone Anaphylaxis:
Dr. David Wright (Allergy, Immunology, Internal Medicine)
Central Illinois Allergy and Respiratory (AIR)
543 W Miller St Ste A
Dr. Andrey Leonov, MD
Allergy and Asthma Clinic
229 Hammes Avenue
Joliet, Il. 60435
***on a side note, if anyone traveling a distance to be tested, I would call and talk to him and let him know ahead of time. The progesterone is not something they have in stock at the clinic to test. Also, my sample was in sesame seed oil, so if you are allergic to nuts, ask for a different base. Hope this will help some people.
Dr Peter Lee (Ching Sang)
Allergy and Immunology
Suite 250, 1641 Hillside Ave, Victoria, BC V8T5G1 Canada
***There are two Dr. Lee in Victoria who both practice Immunology , so make sure you have the correct one:)
Instituto Universitario USP Dexeus
C/ Sabino de Arana, 5-19
08028- Barcelona. España (Spain)
Dr. Katheryn Brown
Allergy Clinic of Tulsa, OK
8 a.m. to 5 p.m. Mountain time, Monday through Friday
8 a.m. to 5 p.m. Eastern time, Monday through Friday
7 a.m. to 7 p.m. Central time, Monday through Thursday
7 a.m. to 6 p.m. Friday
International Appointment Offices
Mayo Clinic in Florida
Office hours: 8 a.m. to 5 p.m. (Eastern time) Monday through Friday
Mayo Clinic in Minnesota
Office hours: 7:30 a.m. to 5 p.m. (Central time) Monday through Friday
Mayo Clinic in Arizona
Call toll free from Mexico: 001-800-010-1390
Office hours: 8 a.m. to 5 p.m. (Mountain time) Monday through Friday
When arranging an appointment, please provide:
* the patient's name as it appears on the passport (last, first, middle)
* patient's gender
* patient's address
* patient's date of birth
* direct patient telephone number
* direct patient fax number
* patient's email address (if available)
* a brief explanation of the current medical problem (in English)
the preferred date of appointment
* whether the patient will need an interpreter, and if so, what language
Please check this list frequently, as I will update when I find new docs/ clinics!
I'm Allergic to My Hormones!, Parts 3 & 4 and the treatments I developed for AIPA/APD
- One and only 100% organic Hormone Allergy Treatment that I developed!
My Patent Pending Hormone Allergy Treatment that I developed and literally saved my life.
- My new Facebook account for Autoimmune Progesterone Dermatitis & Autoimmune Progesterone Anaphyl
Please feel free to send me a friend request!!!
- Awareness for AIPA | aipa
My new website on Awareness for Progesterone allergies- Progesterone Induced Anaphylaxis (AIPA), Autoimmune Progesterone Anaphylaxis (AIPA), and Autoimmune Progesterone Dermatitis (APD).
- I'm Allergic to My Hormones!-Awareness for Progesterone Induced Anaphylaxis-Autoimmune Progesterone
Part 3: Due to the medical professions lack of knowledge on Progesterone Induced Anaphylaxis, the prescription drugs they were giving me throughout the years, caused more damage, conditions, and diseases. Although...
- I'm Allergic to My Hormones! Awareness for Progesterone Induced Anaphylaxis, Part 4
Part 4: Ok, time to finish my series. In Part 3 of Im Allergic To My Hormones, my preview of Part 4 stated that Yes, I have found a treatment for my rare autoimmune disease. Im happy to report that...
How Undiagnosed High Histamine Levels can cause Autoimmune Diseases
- Explanation of Allergies- Best Natural Antihistamines!
My theories on how undiagnosed high histamine levels can spiral out of control causing severe allergies, autoimmune diseases like AIPA & APD, ADD/ADHD, Bipolar Disorder, anger issues, and others. Based on a genetic condition called Histadelia.
Share Your Story and Information with Others
She-rah (author) from Petersburg, IL on May 05, 2011:
Thank you for your comment DL. Yes, govt/FDA says lots of things, blah! That's why I included the link about smoking to validate my statement. Smoking is bad, I agree, but I feel that it's no worse than the prescription drugs that have tons of side effects, some worse than the illness it's supposed to treat including death from some that are passed or said to be "safe" by the FDA. "Benefits outweigh the risks" with any kind of treatment.
Darvocet Lawsuit on April 29, 2011:
"Sometimes smoking has more benefits than risks."
--Quite ironic. Why do governments will say that it's dangerous to your health?
But, anyway I learned a lot from here. Nice hub She.
She-rah (author) from Petersburg, IL on February 15, 2011:
Hello Mica1126, Thanks so much for the question! Actually, I have no idea, lol. I lived with a lot of guilt/depression for many years because I was ultimately bedridden on many occasions, not able to do much at all with/for my kids or husband. It was horrible! To be honest, my kids & husband were about the only things that kept me pushing for so long or I probably would have eventually succumb to complete shock. My wonderful husband has worked his tail off to try and make ends meet financially and take care of our kids, and I did what I could, when I could (about 2 weeks a month). I am doing quite well now, small glitches is what I call what I still have issues with. Very minor for me compared to what I was facing before I developed my treatments. I can not explain what it was like to literally suffocate, repeatedly siezure, hallucinate from lack of oxygen to my brain, not be able to eat for days, suffer excruciating pain...I only know that we, as humans, have the ability to endure if we maintain the drive to do so! I am very competitive by nature and I believe this to be one of the reasons I did not give up. ME vs the AIPA & DOCTORS, I was determined to win this battle and I'm still kicking and screaming :) I currently work with many women from around the world, which is wonderful support for not only myself but also for them. Just knowing we are not alone is very comforting for us! They are facing the same battles as I did with their health and neglect from the medical community. I hope this answers your question and have a great day!
Mica1126 on February 15, 2011:
Gosh, how have you been able to go through all this with 4 kids?
She-rah (author) from Petersburg, IL on October 31, 2010:
Hello Kate! Thank you so much for your comment and you're very welcome! Yes, hormone imbalances, allergies, etc. are linked to various autoimmune disorders like MS, RA, Fibromyalgia, lupus... I'm guessing that you are probably suffering from anaphylactic reactions caused by your progesterone as well. Major symptom increase, starts about 3-10 days before your period and then begin to subside a day or 2 after you start your period. My guess is that the MS is a direct result of the severe allergy. May not really be MS, sort to speak, just how your hormone allergy is presenting/manifesting itself. The condition not only causes severe allergic reactions to progesterone but also has a vast array of other autoimmune disorder symptoms and can manifest itself differently in different people, based on genetics. Some with this specific allergy or other severe allergies may end up diagnosed with the MS, or they may manifest with other types of autoimmune disorders and symptoms. I believe that most of these diseases/disorders are caused by a constant high level of histamine that remains undiagnosed and uncontrolled leading to other serious conditions like the ones we suffer. You should probably speak to an allergist/immunologist or dermatologist(if you can find one that is aware of the condition), and see if you can get epipens. What you've described with the rash and throat swelling is life threatening and dangerous. Might be a good idea to have the epinephrine until you decide what you think your best treatment options may be. I am still in remission but as a precaution, I have epinephrine in my purse and at home at all times just in case. I've never had to use it, not sure I could stab myself with it anyway, lol. You may want to consider the oil infusion instead because of the anaphylaxis. The more severe you are the more estrogen you will need and the infusion absorption is not diluted with skin conditioning ingredients. I love the cream, I actually use both for different benefits on different parts of my body. Both contain the same amount of estrogen and I have used the cream alone but the oil infusion allows for more absorption. My email is firstname.lastname@example.org if you would like to discuss things further or have any questions. Hope this helps!!! Lori
Kate Cook on October 30, 2010:
I was diagnosed with Multiple Sclerosis about 10 years ago. I had started to go blind in one eye, and have had all sorts of other issues. Around the same time, I started waking up in the morning once or twice a month with a rash all over my face and feeling like my throat was going to close up. My allergies in general (and all of the other autoimmune symptoms) get ten times worse during that time of the month, and when I am ovulating. All of a sudden it occurred to me that I may be allergic to my own hormones! I thought I might have been crazy until I read your hub. I will strongly consider ordering your cream. Thank you so much.
She-rah (author) from Petersburg, IL on October 11, 2010:
Completely agree Pollyannalana! It's amazing all the nightmare stories you hear anymore. Can't believe that about your SIL, well, yes I can. Doctors just do not listen anymore and blame everything on some kind of mental disorder. I had that same problem with stitches, the never dissolved and I had to dig and pull it out after it repeatedly became infected. After my tubal ligation and they ended up puncturing 2 holes in my bladder left it and stitched me back up while I was profusely bleeding internally. The ER that saw me never even contacted the doc that performed the surgery and I had to wait 36hrs to even see anyone that would do anything about it. Most doctors make me so angry I'm going to end up developing a mental disorder from having to deal with them, lol.
Aya Katz- No, most doctors blame all health problems on smoking if you're a smoker. Just like they did with me. I agree that smoking is bad but for someone like me, it helps suppress my immune system which is exactly what I need due to my autoimmunity. I honestly don't see how it's any worse than all the toxic chemical drugs they prescribe everyday to people like me. They could be worse with less benefit!
Aya Katz from The Ozarks on October 10, 2010:
She-Rah, that was very enlightening to me about how cigarette smoking can suppress the immune system and can be used for therapeutic purposes. Thanks so much for including that link. I don't think this is well known at all.
Pollyannalana from US on October 10, 2010:
I know exactly what you mean, I have had so much trouble with doctors I feel like I must have LIAR written across my forehead! If they keep any sort of records though it must show what ever was wrong was eventually found, one I have a hub on here about, having a stitch about 6 inches long still in me for 7 years. I had no idea why that red dot would never heal and infected many times and seven years later it got caught on a sweater and started pulling out! That is the least of them.My daughter-in-law who has passed away now in her twenties from an aneurysm, was walking around with burst appendix months at least because doctors blamed her pain on everything else and it is a wonder it didn't kill her and she couldn't have babies after they did find it and got in there cutting all the mass apart. She apparently didn't sue or maybe they wiggled out of it somehow, I never asked.
She-rah (author) from Petersburg, IL on May 03, 2010:
Thanks so much for stopping by and leaving a comment Cheeky Girl! It is challenging some days but I am sooooo much better now, I don't even notice the very minor things that I still have issues with. It's just become part of daily life and at least I am able to have quality of life now.
Cassandra Mantis from UK and Nerujenia on May 02, 2010:
Great hub, She-rah. Wow, having to deal with this must be a challenge. You have had to invest a lot of effore in learning the causes of the problems that beset you and affected your health. The smoking sure would have a negative affect on things. Will read the rest of your health hubs on this. I am so impressed! Really great hub! : )
She-rah (author) from Petersburg, IL on April 29, 2010:
Hi Holly! Absolutely, will do anything I can to help. My email is email@example.com. You can also contact me via my new website (still working on it but it's functional). The web address is: www.awarenessforaipa.com or firstname.lastname@example.org (email for website). The reason doctors say idiopathic is because they're not to bright when it comes to AIPA, lol. At least they've been able to diagnose the anaphylaxis for you, they just can't figure out the cause. Sounds like me only they couldn't even figure out I was suffering from anaphylaxis. You've made some progress at least with dealing with the doctors. Do you have epipens and inhalers handy at all times??? Please do contact me and we'll discuss things further!
Holly on April 29, 2010:
I think I need your help.. ? I was recently diagnosed with idiopathic anaphylaxis but I think from reading what you have provided.. I may have progesterone induced anaphylaxis.. Any way that we could communicate via e-mail or another way?
She-rah (author) from Petersburg, IL on March 11, 2010:
Will do Mysyvet! Thanks again for your wonderful comments! YES, YES, keep fighting and doctor shopping until you get diagnosed. Don't let them treat you badly and get you down, it is such a rare condition. It's very difficult, I know, it was the hardest part for me. Go to the doctors fully armed with everything you can find on Autoimmune Progesterone Dermatitis/ Anaphylasis and make them listen to you! Talk to you very soon! :)
Msyvet on March 11, 2010:
I just have to say once again, the more I read on these pages the more comfort I feel. Thank you again and again. I will be pushing my doctors hard for an answer...chances are, they may not want to give me one if they don't understand it and it isn't in the medical books. But that won't stop me.Keep writing She-ra!
She-rah (author) from Petersburg, IL on February 27, 2010:
Your very welcome for sharing and thank you for the comments. I was a little worried about getting bashed about the whole smoking thing. Of course,I know it's bad, but for some one who's autoimmune, it's benefits could very well out weigh the risks. I'm actually considering trying the nicotine patch, again, so that I'm still suppressing my immune system but not killing myself with cigarettes. I despise the word "hypochondriac", literally had one doctor tell me I needed mental help while I was sitting in his office with my throat and lungs closing up. He never did check or treat me and I had to go to the emergency room. It is so rough dealing with doctors and others that treat you like that when you already feel so hopeless and I'm so sorry! Keep your chin up and do everything you can to get help and treatment. I'm positive that there is something that can be done for you. Research and Fight with the doctors tooth and nail!!!
Jasmine on February 27, 2010:
Quitting smoking (actually, smoking one cigaret a day) had positive effect on my health (I feel a little better). And some doctors calling me hypochondriac are so wrong!!! I still hope one day I´ll find out what my disease is and how I can treat it. Thanks for sharing your experience!
She-rah (author) from Petersburg, IL on February 27, 2010:
Hi Pamela, Yes I read your hub and it's actually what motivated me to write this series. I've done the diet off and on due to a certain kind of infection and it does help but my weight gets down too low, 88lbs. The infection can actually start in healthy people and be the cause of autoimmunity or vice versa. I posted a link for you on high histamine levels causing Lupus, RA, and other autoimmune diseases, thought it might help you. Don't be sorry for me and everything I've been through, I just want others with similar medical problems to know that if they push hard enough, no matter how hard it is, and do their own research that they can end up where I am at today. I'm currently in remission using only natural treatments, I will get to that in my next few hubs. Without experiencing everything I have been through, I wouldn't be able to write this for others, and I wouldn't be in "remission". Don't worry, there is currently a happy ending for me and my natural treatments have given me some pretty great side effects since they are hormones. Thank you so much for your comment, advice, and stay strong!
Pamela Oglesby from Sunny Florida on February 27, 2010:
She-rah, I am sorry you have gone through such a horrible time. I have written a lot about auto-immune disease including a hub called Did you know there are 80 types of auto-immune diseases. I have lupus, etc. but my point is to increase awareness because so often these diseses go undiagnosed. I was accused of depression, not getting along with my husband, psychiatric causes, etc. It turned out to be lupus, Sjogrens' and some others but the point is you are on the right track by keeping track of tests, symptoms, etc. I found that eating a vegetarian diet with nothing white (no flour, sugar, no dairy) that my symptoms improved. I don't always stay on the diet unfortunately, sometimes I've just got to have that piece of chocolate. I read 'Eat to Live' by Joel Fuhrman. I don't know if that would help you but I hope something does soon. I know I've rambled on but I want you to know you are not alone.